Tag Archives: circle of life

When it comes to research, there are so many occurrences simultaneously that it’s very difficult, at times, to keep one’s hand on the pulse of so much activity. When it comes to the notion of research in our diabetes world, there is something I have noticed that I want to address. It’s this notion of the immediate discounting of research projects because the patient is on some sort of immunosuppression regime. I get it. More than that, so do the research centers.

Let’s be clear, this is about diabetes research as a whole, and not specifically of the work being done at any one place. I have a very unique perspective because of my constant involvement in the research world, and when it comes to that, I have often shared my thoughts and surely welcome yours.*

The people who undergo clinical trials are, usually, in a very dire position with their diabetes. It’s not as if there is a protocol in place and volunteers are merely chosen because they live with type one diabetes; there is more consideration than just that point. In many cases, due to severe glycemic reactions, these patients are in dire need of intervention. For whatever the reason, people seem to believe that patients in these protocols are just like their loved ones at home but are now on immunosuppression. I know this because I constantly see the comment from the uninformed, “Yeah, but they are on immunosuppression drugs” as if to discount what is going on.

Hypoglycemia unawareness is a very dangerous complication to having diabetes and usually required in many of the diabetes protocols to be involved in clinical trials; dealing with having something placed inside the patient’s body. This is not a phenomena of just having a low blood sugar; hypoglycemia unawareness stops people from functioning in a normal surrounding. Without warning, to collapse from a low blood sugar…….again, WITHOUT WARNING. It can make driving, functioning, and in many cases from even living alone extremely difficult. It’s very serious. So is severe hyperglycemia allowing for almost a constant threat of DKA. Imagine the impact of having high blood sugar and keytones almost always.

When applying for a clinical trial these patients, after an exhausting process, have come to the conclusion that living with the immunosuppression drugs outweighs the quality of life they are presently living. Immunosuppression drugs prevent the body from rejecting anything not recognized ‘as self’ and usually not used in children unless their life is in jeopardy. Understanding that point; if someone needed a kidney transplant, they would be on immunosuppression drugs; a heart transplant results in the same regime and yet, no one states, “ah yes but they are on immunosuppression drugs” because the procedure outweighs where the patient’s physical status is at the time of the transplant.

All things Islet Cell come into mind here. Donated, porcine, stem-cell derived, implantable device, and other means of placing cells in a patient’s body and functioning is an amazing progression to the end game being sought. For the present, it’s in patients that need a better quality of life than what they have, living with this diabetes complication every day. And it’s just that, a severe diabetes complication.

Now in as much as these protocols occurring around the world are what they are; they are also MAJOR STEPS in every research lab’s Holy Grail. To perfect the process and create a protocol that someday CAN be used in everyone with diabetes, without anything else that must be administered. Of course that is what each lab out there searches continuously to achieve.

I have shared with you all a million times that my regret is that I have been at this for over 23 years. I have learned a few things. I lived in a world before the everyday use of pumps, pork insulin (although people diagnosed after 2005 might be more familiar with the word ‘porcine’ than ‘pork’ or ‘pig’—-oh we have come so far), and when the letters CGM were mere letters that followed BFL. There was a time this world emphatically believed that islet cells COULD NOT EVER function in another human being. IT WOULD NEVER WORK under ANY circumstances was the belief. My question, of late, has always been with so many labs doing SO MUCH regarding the use of Islet Cells; why is not every penny of research money in this world going to perfect the hurdles to MAKE work what we know CAN work?

So the next time you find yourself saying the rhetoric phrase of, “Yeah but they are on immunosuppression drugs……..” perhaps we might all be better served to ask, “Okay, it needs to work for my child to use it, but it does work in some, how can I help to perfect it?” Of course this is just my opinion and as always, I surely welcome yours.

If it was said that one day we will walk on the moon, and we did; is it not just as important for us as parents to say, one day my child will walk without diabetes. As it stands now in our diabetes world, we have one small step for man……..it’s the next large leap for mankind that needs all of our attention.

* My disclaimer is, as always, that I have chosen to be an employee of the Diabetes Research Institute Foundation which supports the work of the Diabetes Research Institute at the University of Miami Miller School of Medicine.

“Do any human beings ever realize life while they live it?” One of my favorite plays to both read and to have performed is Thornton WiIder’s Our Town. Pictured above from over 35 years ago, this one line still resonates with me so many years after I played George, in a truly wonderful production. How would you answer this question from the classic?

On this night my Brother-in-law, Jon, was joined by other Detectives in their retirement dinner. For over 30 years he served a community and saw things that he will never talk about and did his job with dignity and honor. In his ‘thank you’ speech, he emotionally mentioned his Mom, Dad, and brother (a Vietnam War Hero) who are all deceased; and how he wished they were with him on this night. And perhaps because this is also the 7th anniversary of my dad’s world departure, well it’s a tad emotional.

The people who came before us. They mean something, they really do.

Your kids are not wearing an insulin pump because it just appeared. CGMs did not just come into being. Anything you use today to manage your diabetes did not just magically happen. Things came about because years ago someone had a vision. Someone believed that our world could be ‘better’…….and they set out to make it that way.

I stopped counting how many times I picked up the phone to ‘talk baseball’ with my dad realizing that it could not happen. His voice is silenced. But I have learned to appreciate the many things he left for us to still enjoy; because they were his, and he gave them to us.

It is this appreciation that makes me realize the things we now have should never be taken for granted and should be understood for what they were/are. Perhaps not perfect when they were first introduced, but progressed and have been perfected into something extremely useful. Something that has changed our lives.

My dad loved science and medical advancement. That interest was passed on to me………and I love learning all I can regarding what impacts my children and their living with type 1 diabetes. I think of him with each new development in our diabetes world because he left that love to me and it has served me beyond measure……………..I only wish I could have one day to talk to him about all of this exciting stuff again. Even an hour, I would take. Even a minute.

The main character answers the question posed above, in the play, when he responds;
“No……………………………… Saints and poets maybe…they do some.”

I AM SO ANGRY. She is gone. It happened in 2012. Now a Medical Practitioners Tribunal Service in Manchester, UK, is hearing the case to see what can be done about it. Claire Taylor was a talented dancer and baker who wanted a career as a dietitian as her older brother Andrew had Type 1 diabetes. Even with this knowledge, her diagnosis was missed being sick for up to two months prior to her death.

What will it take for us, here in America to realize THAT THIS IS A PROBLEM here as well? On a day I read that d-mom Debbie George was hugely successful in California with a Resolution passed 38-0 for better diabetes education; I’m reminded that too many do not find this subject important enough to tackle.

I plead with you, Be in contact with anyone and everyone you know in this diabetes world. We have an ADA conference approaching and an AADE conference approaching……please organize a group of people in the same room to discuss, at least, the missed diagnosis of T1D. Even if we do not come up with solutions……please let’s just not talk about it thinking it will just ‘go away’. It will not.

I have hugged parents who have lost their child needlessly. I have talked to top professionals in this field who say that diagnosis of T1D upon DKA is rising. We pride ourselves in America as being leaders——PLEASE TAKE A LEAD from our friends in the UK…..let’s open a dialogue on trying to stop diagnosing T1D by being diagnosed in DKA. This is one wound we can, and should, take everything in our power to prevent before the knife cuts the flesh.

Please pass this along to anyone you know in these organizations……..a dialogue can surely continue what has started in ten different states already.

What will it take? PLEASE let’s open a dialogue. It’s getting so tiring. Why MUST it always happen again, and again, and again. Take action—-ask the organizers of these conferences to hold a discussion……a simple discussion on this topic. We cannot begin if we do not talk about it……..I assure you it will not go away!!!!!…….and in the meantime it will cost more people their very lives……..needlessly.

I’m always touched by the strength of families who do so much to make “Hope” a reality. The biggest hope I will always have is for a cure for this disease. I know, I know, I KNOW so many say that they are tired of hearing about a cure. It has been promised so long. The doctor said way back when it will be in just a few years. I heard all of that also…..I also do not have an ostrich complex with my head in the sand. I know the time upon the clock.

And still……..

The DRI had their walk last weekend at Marlins Stadium. Thousands upon thousands were in attendance. And wherever and whoever you support, you attend these grass-root-type-events also. The next time you are at one, do what I do. I look around at all the families that have been diagnosed more recently than in our household. I look at the little faces who want a cure……….need a cure. That hope NEEDS to stay alive UNTIL we get there NO MATTER how long it takes.

The fire in me will never die until we reach that goal we sought from the beginning, a cure. Management devices are great, and ever-changing, but my goal has never changed since I stood by Kaitlyn’s bedside and promised her that we would get there. Where is that promise in the world today? Will we, collectively, be happy with just better management tools? I welcome these management tools. I do.

I have seen some of the most incredible advances in this area. We were there before pumps were in everyday use; we were there when CGM were merely three letters of the alphabet; glucometers took 90 seconds to give a reading; there was no computer chip on a test strip; insulin was made of pork……and much, much more, We welcomed all of these wonderful advances.

And yet, and still, with all I have seen in my life, I take each breath searching for the one and only thing that will make me sleep peacefully at night. I think we need to get back to what every parents REALLY wants. I think we need to end this thinking that something which can be grasped is so unreachable. I think we need to stop listening to voices that say, “Well sure the cure is important but we need to give all of our focus to a better device”.

Yes, we do need to give focus to better devices………but an equal and even thrust MUST ALSO BE GIVEN to VOICES pushing for a biological cure, where ever you believe that to be. We walked on the moon…..the vision was given, work was thrust toward that end, and it happened. Impossible just means I’m-Possible to make a difference.

Does a cure for our children deserve any less? Do our children deserve any less?

The call comes in.
Another child is diagnosed with type one diabetes.
Another family is impacted and changed forever.
The call comes in.

I’m surely not an island when it comes to this type thing, many take the call when it happens. We have been there. We become the ‘one’ people call for whatever the reason; for however the reason. People hear of someone being diagnosed and they say, “….you need to call my friend, they are very involved……and they can help you.
The call comes in.

I hate those calls. I certainly don’t mind helping in any way I can but I also am well aware……well aware too much what is about to happen in a household I do not know. I have been there……twice……I wish I never became aware.

One would almost think it gets easier. It doesn’t. All of the memories come rushing back to ‘that’ September 26th, or ‘that’ March 20th when my kids were diagnosed. I now know what I know because going through it educated me like nothing else I could ever learn. Nothing else compares.

That’s said, there were others helping us also in 1992. Barbara, Faye, Karen, Marie, Jon, Charlie, Joe, Rhoda, Jane, and many others. You see this is what we do, we are parents. Someone was there for us and we are there for others……..it’s the Circle of Life. It’s the Blue Circle of Life in our diabetes world, something we would never see in the Lion King, but it’s there none-the-less. You have helped someone else because someone helped you.

Read these words from the song, carefully:It’s the Circle of Life
And it moves us all
Through despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the Circle
The (Blue) Circle of Life

These words are us. Share how your circle came about and how you continued it.
Today I say thank you to everyone out there who took the time to be part of this Diabetes Blue Circle of Life……and I thank those who were part of ours, so long ago but still remembered, when we needed it most.

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Disclaimer

This is my blog. I am not a medical professional and any medical written word is read somewhere else and will be credited accordingly. There is no substitution for YOUR medical team. I am not paid for what is written on this blog.